Is this normal? Very noticeable tubing... (UPDATE, No, it's not)

The final frontier. Deciding when, if and how.
ItsTime
Posts: 11
Joined: Fri Sep 23, 2016 10:17 am

Is this normal? Very noticeable tubing... (UPDATE, No, it's not)

Postby ItsTime » Thu Oct 06, 2016 1:19 pm

Hi all.

So I'm about 4 weeks post op and am pretty disappointed with my implant. From the incision above the penis there is an abnormal bulge that goes about a quarter of the way up the shaft, takes a sharp left turn and then back up towards the base of the penis and around to the scrotum. It creates sort of a bulging V shape up the top of my penis, again, about a quarter of the way up. I brought it up to my doc at my 2 week post op and they said there was nothing they could do, that it was normal and not to worry about it.

Besides being really unsightly and obvious, it also is pretty uncomfortable to the touch.

I guess I'm wondering if anyone else had this result from an infrapubic installation, or if I should just accept it as normal? I've never seen any post op pictures that look like this, and everything I've read about the Titan is that it's supposed to be completely concealed and indiscernable. I don't want to be a diva, but I don't think this is right.
Last edited by ItsTime on Tue Oct 11, 2016 8:30 am, edited 1 time in total.

stiffupperlip
Posts: 108
Joined: Fri Mar 11, 2016 8:42 pm

Re: Is this normal? Very noticeable tubing...

Postby stiffupperlip » Thu Oct 06, 2016 1:24 pm

Who did your surgery?
22cm Titan No RTE's Dr. Kramer Oct 2016

Lost Sheep
Posts: 6162
Joined: Mon Jul 04, 2016 11:16 pm

Re: Is this normal? Very noticeable tubing...

Postby Lost Sheep » Thu Oct 06, 2016 1:38 pm

If the discomfort subsides, the bump might be useful as a clitoral stimulator.

All kidding aside, this sounds like a serious defect in your care. The cosmetic outcome is second only in importance to the operational outcome abd this sounds like your implant is at risk for early failure due to

1 erosion of the tube through your skin

2 kinking of the tube

I wonder if the tube could be repositioned without surgery by manipulating the pump and tubing? If your Doctor is not taking your concerns seriously, a second opinion from another doctor or the Coloplast representative might be in order. The Coloplast rep is, of course, probably not a physician, but does have exrensive knowledge of the product, access to a vast store os information about outcomes (both good and bad, consequential and inconsequential) and a vested interest in EVERY use of the product having a good result.

Be insistent. Good luck

Lost Sheep
Last edited by Lost Sheep on Thu Oct 06, 2016 2:49 pm, edited 1 time in total.
Lost Sheep
AMS LGX 18+3 Nov 6, 2017
Prostate Cancer 2023
READ OLD THREADS-ask better questions -better understand answers
Be part of your medical team
Document pre-op size-photos and written records
Pre-op VED therapy helps. Post-op is another matter

ItsTime
Posts: 11
Joined: Fri Sep 23, 2016 10:17 am

Re: Is this normal? Very noticeable tubing...

Postby ItsTime » Thu Oct 06, 2016 1:49 pm

stiffupperlip wrote:who did your surgery?


Eh, I'd rather not say just yet... I'd hate for this to be the first thing that comes up when you google his name. I mentioned it in a previous post, a guy out of Boston.

Lost Sheep wrote:If the discomfort subsides, the bump might be useful as a clitoral stimulator.

All kidding aside, this sounds like a serious defect in your care. The cosmetic outcome is second only in importance to the operational outcome abd this sounds like your implant is at risk for early failure due to

1 erosion of the tube through your skin

2 kinking of the tube

I wonder if the tube could be repositioned without surgery by manipulating the pump and tubing? If your Doctor is not taking your concerns seriously, a second opinion from another doctor or the Coloplast representative might be in order. The Coloplast rep is, of course, probably not a physician, but does have exrensive knowledge of the product, access to a vast store os information about outcomes (both good and bad, consequential anvpd inconsequential) and a vested interest in EVERY use of the pruduct having a good result.

Be insistent. Good luck

Lost Sheep


I hadn't even thought about the early failure risk, that's a great point. Do we have a rep from Coloplast on here or somebody people recommend getting in touch with?

As far as repositioning, I've tried to manipulate as forcefully as I could, but it doesn't seem to budge. Even under full deflation, it seems like there is too much pressure in there to get it to move. I don't know if there's simply too much slack in there and it has no where else to go or what...

Lost Sheep
Posts: 6162
Joined: Mon Jul 04, 2016 11:16 pm

Re: Is this normal? Very noticeable tubing...

Postby Lost Sheep » Thu Oct 06, 2016 2:16 pm

Repositioning might be something your Doctor may have to do and perhaps with a spinal block. It might be uncomfortable .

To find the Coloplast rep for your area, the compny webb site is where I would go. I would also ask my Doctor. You know, oftentimes the rep is present when the implant is done.

Note: I am not any kind of medical professional, but am (I think) doing more than your average patient's due diligence while I prepare for my own surgery.

Lost Sheep
Lost Sheep
AMS LGX 18+3 Nov 6, 2017
Prostate Cancer 2023
READ OLD THREADS-ask better questions -better understand answers
Be part of your medical team
Document pre-op size-photos and written records
Pre-op VED therapy helps. Post-op is another matter

charlesr
Posts: 397
Joined: Wed Jun 24, 2015 11:28 pm

Re: Is this normal? Very noticeable tubing...

Postby charlesr » Thu Oct 06, 2016 10:03 pm

I have a Coloplast Titan and nothing even close to that phenomena. I would definitely have it checked out by another urologist who does implants.
Born 1951. Radical Robotic Prostatectomy on October 6, 2013. Bionic with Titan Touch with Bioflex Zero Degree 18cm w/ (1) rte Implant, Infrapubic, on July 13, 2015.

ItsTime
Posts: 11
Joined: Fri Sep 23, 2016 10:17 am

Re: Is this normal? Very noticeable tubing...

Postby ItsTime » Fri Oct 07, 2016 9:09 am

Here's a couple photos... I definitely haven't seen it on anyone else before.

IMG_5807.JPG
IMG_5807.JPG (98.48 KiB) Viewed 3056 times


IMG_5805.JPG
IMG_5805.JPG (86.88 KiB) Viewed 3056 times

dg_moore
Posts: 1885
Joined: Mon Apr 25, 2011 9:34 am

Re: Is this normal? Very noticeable tubing...

Postby dg_moore » Fri Oct 07, 2016 9:46 am

This doesn't look normal to me. I can feel tubing at the base of my penis, but it's deep and I have to press pretty hard to detect it - it is not visible in any case and is not problematic at all. It's probably quite difficult for the surgeon to hide all traces of the tubing, but what you have seems quite unusual.
Dave, 80, Maryland - Implant (Titan) 2008 by Dr. Andrew Kramer (failed Sept 2020) - never used due to a stroke that, among other things, ended my sex life.
Life is not the way it's supposed to be, it's the way it is.

PCHelp76180
Posts: 366
Joined: Sun Jan 11, 2015 6:01 pm
Contact:

Re: Is this normal? Very noticeable tubing...

Postby PCHelp76180 » Fri Oct 07, 2016 10:44 am

ItsTime wrote:Here's a couple photos... I definitely haven't seen it on anyone else before.

IMG_5807.JPG


IMG_5805.JPG



I have had the same issue on the right side since about 4 weeks post-op, I'll post a couple of photos later. Funny enough I see my Dr on Monday to discuss this. I'll let you know what I am told.
ED since my late 30's. Implanted 7/7/15 Titan Coloplast 18cm +4 cm extenders. Revision Jan 2017

ItsTime
Posts: 11
Joined: Fri Sep 23, 2016 10:17 am

Re: Is this normal? Very noticeable tubing...

Postby ItsTime » Fri Oct 07, 2016 10:54 am

PCHelp76180 wrote:
ItsTime wrote:Here's a couple photos... I definitely haven't seen it on anyone else before.

IMG_5807.JPG

IMG_5805.JPG



I have had the same issue on the right side since about 4 weeks post-op, I'll post a couple of photos later. Funny enough I see my Dr on Monday to discuss this. I'll let you know what I am told.


Interesting, I'm curious to hear what your doc says. Mine was definitely visible from day 1, but hearing that yours developed a few weeks later makes me think something herniated on your abdomen or something.


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